NF1 plexiform neurofibroma (PN)

Extra Special Care for Our NF1 Patients

We understand that an NF1 plexiform neurofibroma (PN) diagnosis can be overwhelming for the entire family, and CareMed is here to help. We provide ongoing, personalized support to make sure the whole family understands the recommended medication, its dosage, and any potential side effects.

What is NF1?1

NF1 is a rare, progressive condition caused by a mutation or flaw in a particular gene. It is usually diagnosed in early childhood, appearing in an estimated 1 out of every 3,000 infants. It’s a disorder that is most commonly characterized by an increased risk of developing noncancerous (benign) and cancerous (malignant) tumors, as well as various other physical and neurological manifestations.

It is estimated that up to 50% of patients with NF1 may have at least one plexiform neurofibroma.2

Treatment Options

Previously, the standard treatment for NF1 PN was surgery, but it may not be recommended. Tumors may not be completely removed with surgery, because they may be closely intertwined with critical nerves and major organs. Now, there is another option – KOSELUGO™ (selumetinib). It is the first and only FDA-approved treatment available proven to shrink PN tumors.

ONESOURCE™ Patient Support

Another way we are supporting patients taking KOSELUGO™ is partnering with Alexion and offering the ONESOURCE patient support program. It’s a program that is totally free and will serve as an extra layer of support from the manufacturer. Whether your child is newly diagnosed or had the condition for some time, ONESOURCE can help you make sense of insurance coverage, answer any questions about a treatment plan, and connect you to community resources.

Visit ONESOURCE today:

Why Choose CareMed?

  • We act as your advocate with your physician, insurance company, and others involved in your treatment.
  • Education about your medication, its dosage, and any potential side effects, along with 24/7 access to our clinicians and pharmacists.
  • Free shipping via FedEx. If you signed up for our texting program, you will be texted your tracking number before we ship.
  • When it’s time for a refill, we have you covered. We will send you refill reminders and call you to schedule your refill seven days prior to your refill due date.

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If you are a provider and would like to refer to CareMed, click below for our order forms.

1https://koselugo.com/understanding-nf1-pn#about-nf1-pn

2https://rarediseases.org/rare-diseases/neurofibromatosis-type-1-nf1/#disease-overview-main